December 5, 1999. Jeff and Sara celebrate their 56th wedding
anniversary with a cup of coffee at the Village Health Care Center.
And after 56 years, they are still considered "love birds".
March 9, 2000
Seeley Swan Pathfinder
Seeley Lake, Montana
by Patricia Swan Smith
For the Pathfinder
Ten years ago, long-time Seeley residents Jeff and Sara Macon would celebrate their anniversary by going out to a nice dinner and having a few cocktails. Late last year they celebrated their 56th anniversary with coffee at the Village Health Care Center where Sara resides.
Sara was diagnosed with Alzheimer's nine years ago. Jeff and his son Gary visit her everyday at the center. Jeff said she still knows both of them and interacts well.
Jeff and Sara moved to Missoula in 1993 when Sara's medical needs outweighed Seeley's resources. Jeff wanted to keep Sara at home, but as with many Alzheimer patients, the need for 24-hour care destroyed that hope.
Before moving to Missoula, Jeff contacted the Pathfinder to see if someone could do a story about Alzheimer's because when Sara was diagnosed most of her friends stopped coming around. The diagnosis and the desertion of long-time friends hit both of them hard.
"I don't want to talk about the horrors of Alzheimer's Disease; I just want people to know there is life after Alzheimer's, and there is nothing to be afraid of," Jeff said in the 1993 interview.
"At first we were overwhelmed, but with the help of Diane Parker and a doctor, we were able to keep Sara home for two years.
"While I encouraged people to visit Sara, most people were afraid to visit her so she spent two years alone.
"I think it was because of the horror stories. It was real hard when her friends quit coming over. One time one of her old friends called to see if she wanted to go to lunch, and Sara was so excited she spent two hours getting ready.
"Alzheimer's is not the end of the world, and those who have it can react normally."
Registered nurse Diane Parker said that many people are afraid of the unknown when dealing with both disease and death.
"People don't know what to do or say, so they stay away, rather than deal with it," she said. "It's their own fears and lack of knowledge that keeps them away."
And that fear leaves the patient lonely, and those caring for the patient alone and overworked.
Alzheimer's is a complicated disease. The parts of the brain most affected are those that deal with memory and emotion.
The battle between diagnosis and the advanced stages of the disease usually lasts about 10 years, although that time period can vary greatly. A decade is the average time from diagnosis to death.
While there are cases of Alzheimer's disease that begin as young as age forty or fifty, the more common is the older-onset disease.
According to the Michigan Society for Medical Research (MISMR), the average American lives well into their seventies. The financial burden to society for Alzheimer's disease has been estimated to be over $80 billion a year, but the price of human suffering for both the patient and the family is incalculable.
"Toward the end, I had to bring Sara to work with me because I had no one to stay with her," Jeff said. "It was sad to see that all her friends had left. I do not want to make anyone feel bad, but I do want them to know that there is nothing to be afraid of, and that people with Alzheimer's need company."
Giving care to a family member with Alzheimer's puts a great strain on the body, mind and spirit. Self-care is a key; and in many cases the family is not able to keep up with the demands of a disease that tears at both the patient and the family members.
Enduring prolonged periods of care for an Alzheimer patient can cause the caretaker feeling such as loss, grief, anger and despair. After it takes its toll on family members, and a decision is made to place a loved-one in a nursing home, depression is very common due to the sorrow and guilt.
Another Seeley man experienced years of caretaking for his father. He had faced the decision of placing his father in an assisted living home, but his father died.
"At some point they become a danger to themselves and others, " he said. "They become obsessed with things. They accidentally start fires. They insist on doing things that cannot be done.
"My father thought I was stealing from him.
"My brothers would say 'Why don't you just do this or that?' but it's not that easy.
"You're dealing with someone who isn't really sick and who is still trying to be independent. It's really hard to put yourself where they're atloosing their mind yet still wanting to live a normal life. You become the bad person when you make decisions that protect them or others."
"It's hard for outsiders to understand."
Today three million Americans have Alzheimer's. MISMR predicts that by the year 2040, more than seven million people could be affected.
It afflicts five percent of people over 65, and 20 percent of those over 80. It is the fourth leading cause of death among the elderly, and it kills 100,000 Americans each year.
It is the leading cause of nursing home placement and dependency for the elderly.
Jeff had to make the decision to place Sara in a nursing home because of her needs. While he would prefer to have her at home, he continues to make the best out their lives.
"Sara naps a lot, but is always up at mealtime, giving us three two-hour time periods in which to visit her each day," he said. "One of us is always there with her during these periods. She gets up a half hour before mealtime, and we stay with her until time to lay down for a nap. You should see the smile on her face when one of the first people she sees when she wakes up is a family member.
"I am happy to say that when I am with Sara there is still a little romance in the air. Sara was always very affectionate, and when she wants a hug she leans forward in her wheelchair. I of course am happy to respond. We have become known as the "love birds" around the nursing home."
Jeff and Sara came to Seeley in 1976. They worked together at Double Arrow in Marketing and then together at Jeff's real estate office in Seeley until Sara's medical needs forced them to move.